Thursday, September 21, 2006

This morning Q had his EEG. Battling traffic, we arrived quite late without having kept Q awake en route--this because he was to sleep during at least part of the EEG if at all possible. He got the little red greasy pencil markings all over his head, the scrubby exfoliant stuff on top of the little red marks, the globs of cream and little metal cup-shaped leads, tape to hold them in place, stretchy gauze to then hold the tape in place. He was hungry while the nice EEG tech lady got him all fixed up, but he was remarkably still and patient--I held him for much of the hooking up procedure, which she said just never works--it did today. He nursed, listened to the birds outside the window, then laid on my tummy and talked. He'd done quite a bit of yelling at the marking phase, so was nice and tired. After much cajoling, he slept, courtesy of the Hyland's teething tablets--which I spotted when I asked her if she could reach the rarely used pacifier out of the diaper bag (my range of motion was small; those leads are very short). Turned out there wasn't a pacifier in the diaper bag, but when I saw the bottle I thought hey, why not try the tablets? Can't hurt, might help. They hadn't even dissolved in his mouth and he was out. Thank God. We proceeded from the EEG lab to the neurologist's office, more than an hour late for Q's appointment.

It was Providence that Q slept because, as it turns out, the telling "blips" in his left frontal lobe showed up almost exclusively when he was asleep. Imagine an itinerant domino that is perpetually falling over and righting itself, falling and righting. When it's all by itself nothing much comes of it's falling and righting, falling and righting. If it gets near another group of dominoes, or they get near it, when next it falls it takes the group with it. The dominoes may vary in size of group, size of individual dominoes, colors, etc.

So when Q is having repetative sharp intakes of breath with his arms flung up, even babbling happily between inhalations, that repetition is likely seizures. When he is tense, appearing stuck in a startle reflex, hypertonic on one side or bilaterally, crying at a higher pitch, sounding scared, worried, this too is a seizure. I suspect that his very restless nights are also seizure activity. Earlier this evening, he had a seizure that lasted about three minutes. It was the longest so far.

(Splat. There goes my head again.)

I began the Trileptal dosing this evening. His dose is tiny (only .5 ml) and will go up steadily over the next few weeks until he is at the daily dose of 5 ml, split and dosed every twelve hours. Apparently, this drug is the most benign of all the seizure drugs. A tiny percentage of patients on this medicine fail to self-regulate sodium excretion, so Q will have his sodium levels checked in three months. A tiny percentage experience irritability or drowsiness which usually resolves in a matter of weeks. Otherwise, there are no side effects for liver damage, bone density, etc. for which I am so thankful. I am praying that this drug will work and we won't have to deal with any others, at least not for a good long while. There are no cognitive effects at all, so Q can go on developing to the best of his abilities.

The fact that he is having seizures means almost nothing for whether or not he'll go on to have worse seizures or "grow out" of them. It's anyone's guess at this point. The reason to treat now is that by controlling the seizures, any chance at further brain damage is curtailed (we hope). Though the seizures he's had so far are not likely to have caused damage, more frequent and/or longer seizures easily could. If he were to have a seizure lasting more than five minutes, to become unresponsive or otherwise seem seriously "off" for any extended length of time, we are to call 911. But hopefully the Trileptal will stop it here.

I talked with the kids about what seizures mean and how we all have our own particular brains with our own "issues"--no brain is exactly like any other, everyone has their own peculiarities and these are Q's. Some of us have difficulty reading, some with focusing, some with seizures. As we have friends who have had seizures and talked with my kids about feeling ill, they are not entirely without context. G said that he doesn't want Q to have seizures. (What does one say?) I told him that I don't either and hopefully the meds will help. We talked about what to do if they see Q upset or if they hear him crying like he's scared. E wants to have some medicine to give him so it will stop--I told her that I wish it worked that way, but the meds will eventually affect it, just not at the time of the seizure. If I'm in the shower they should look at the clock (the bigger kids) and come get me or Grandma. The little ones can just come get me right away, or pat the punkin on his tum or hold his hands. Any gentle touch seems to calm him a little until it passes and he can relax again.

I've eaten my third smallish bowl of chocolate pudding. It's homemade, it's warm, and it's sooooothing. It's high in calcium which is very good for milk production, right? It's chocolate: my dad calls it vitamin "C"--heh. It is, this evening, central to my nifty stress diet.

Tomorrow, we are going to do a little school, do a little cleaning up, and go to the fair. Today it rained so hard and horizontal for about five minutes that there were rivers running rocks, gravel and fir needles down the road, there were waterfalls over the gutters, there was hail dancing on the skylights. Good stuff for reinforcing our lesson from Tuesday about clouds and how various types of precipitation form. We decided that, due to the diameter of the drops, it was definitely rain and not drizzle. (I know you're relieved to hear that.) The weather should be clearer tomorrow--though it sounds like it's dripping out there again. Since the evening was clearing, leaving the clouds all pink and blushing as we were leaving swim lessons I'm going to choose to live in hope, that's what.

Perhaps I'll add a dash of temporary denial and call it good. It won't be as good as the pudding, though. Ha. Got any good resources for info on seizures in babies? How to talk to kids about seizures in their siblings?

I'm off to put the pudding in the fridge and go to bed. Hug your babies. 'Night.

5 comments:

You are just amazing to me, and such a testimony, though I'm sure you'd rather be a testimony in some other way. I am reminded of something Gandalf said in "The Lord of the Rings"; after Frodo laments carrying the burden of the ring, Gandalf says, "So do all who see such times, but that is not for them to decide -all we have to decide is what to do with the time that is given us." That is how I see you living your life and that is the testimony it is for me. You are doing the best with what God has given you.

Oh, honey. How I wish I were there to hug you, bring you chocolate, and cuddle that baby boy. You are the best mother in the entire world. Never doubt that. You are my hero. I admire you so much - you are a tremendous blessing and example to every mother. Thank you for sharing your journey. I know it is not easy.

Sweet Carrie,I shared your story with my dh last night and he could not disagree that some guys ought to be picked up by their (insert name of sensitive body part) and swung wildly through the air.

You are doing great. You are walking in righteousness and doing it all with humor and high spirits. God WILL reward you for this, I have no doubt at all.

You and Q and the rest of your punkins remain a normal and daily part of my prayers. And when I find the boring life wand I will send it your way, until then you just keep hanging on. You have a sisterhood that you cannot see who are gathered about you and will gladly hold your arms up and when you grow weary.Kelli in TN

Thanks for keeping us updated. What precious kids you have, Carrie. Your G. reminds me of my oldest guy. So sweet. We will keep praying that Q. is on his way to outgrowing the seizures. I hope you enjoyed the fair.

First time here?

Me

I'm mothering five gorgeous, perfect children, and homeschooling three of them. I am one of the best-blessed mamas in the universe. Oh and -- there's the small matter of neuro issues here. I suspect that somehow the littlest one's Special Needs behave as some sort of condenser that delivers unusual configurations of Rainbows, Butterflies and Bliss, right in the midst of the ubiquitous and itinerant crazy bits. So we have some stories to tell.